Survival Plan

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[Ana & Alex]
Posts: 73
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Survival Plan

Postby [Ana & Alex] » Sat Aug 12, 2017 9:54 am

So, I'm halfway through treatment and I'm already starting to think about what comes next.

I'm optimising diet and exercising everyday, that's for sure.

Vegetables, fruit and whole grain. White meat from local farmers twice a week, fish a little more often. Super foods in the mix.

I'm doing 5km of nordic walking everyday. Maybe in the winter time I'm feeling up to the task of joining the gym again.

Supplementing with Aspirin, Curcumin, Vitamin D3, Fish oil and Multivitamins.

Now to my problem: my Oncs are only willing to scan me once a year and making blood checks every 3 months :shock: that will NOT work for me.

I was thinking more about (first 3 yrs):

- Body CT once a year and
Pelvis Abdomen MRI and Chest X Ray twice a year
- Blood every two months (with Portacaht flush)
- Colonoscopy once a year

This way I would have an imagiological control every 4 months and without having such a burden from only having CT, since I would be throwing a MR and an X Ray in the mix...

Any thoughts?
Many thanks in advance for your experiences dear fellow CRC Asskickers :)

Love,
Ana
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

James65
Posts: 354
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

Re: Survival Plan

Postby James65 » Sat Aug 12, 2017 10:01 am

So, I've had the primary rectal cancer (permanent bag, etc.) and then a few years later a met in my liver and a few years after that a met in my left lung and while I receive a lot of observation and scans, my docs don't think it's wise to do that may scans in a single year or colonoscopies every year.

I think the main issue is that you get exposed to so much radiation in those scans that it increases rather than decreases the risk of another cancer.

That said, being 3B in your case, I would want to keep on top of things too. Very interested to hear what others think.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

rp1954
Posts: 1161
Joined: Mon Jun 13, 2011 1:13 am

Re: Survival Plan

Postby rp1954 » Sat Aug 12, 2017 7:03 pm

I'd try to get more bloodwork out of the oncologist at the 2 month intervals, or even yearly intervals (a "scan" of panels and markers). There is mention ("evidence") of potential benefit in NCCN guidelines to US physicians with the increased monitoring. For active disease with markers either jumping stepwise (CEA) or going exponential (CA19-9), we used 2-3 week intervals to try out formula changes. We have mostly scanned in 10-15 month intervals, the bloodwork far more informative for us, essentially stuck in early dissimination with the hard to see stuff coming and going.

To me, the problem that many patients can't realize more benefit from high frequency bloodwork is the lack of well coordinated delivery on high performance options at various steps - better bloodwork with a few more panels, multimodal/multistep treatment approaches, improved alternatives frequently perceived as futile or "not standard" (e.g. HAI, Rolles laser tx, aggressive liver surgeries, para aortic LN surgery[with immunochemo]), and better, milder, variable (immuno)chemo to fit the specific situation or bloodwork.

If it is possible, I'd try to improve the two month period with occasional tests with more panels. We pay for these tests ourselves rather than rely on purblind bulk medical practices of one size fits all, with missing components that fit the personal situation.

If one takes cimetidine long term, I would insist on at least one CA19-9 measurement as a predictive marker to improve the choice and result. Although CA19-9 assessment qualities will change with timing (before surgery or chemo vs after), the Japanese papers suggest that a CA19-9 value between 0 and 2 means long term cimetidine can't help.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

JJH
Posts: 67
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Survival Plan

Postby JJH » Sat Aug 12, 2017 11:07 pm

You could add C Reactive Protein to help track systemic inflammation:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57488&p=454090#p454090

https://www.lifeline.de/diagnose/laborwerte/crp-wert-id47656.html

Also, you might want to add one or two tumor markers for female cancers (e.g., CA 125, AFP) since you may be at risk for secondary cancers of this type:

https://www.oncolink.org/cancer-treatment/procedures-diagnostic-tests/blood-tests-tumor-diagnostic-tests/patient-guide-to-tumor-markers
Last edited by JJH on Mon Aug 14, 2017 10:47 pm, edited 1 time in total.

[Ana & Alex]
Posts: 73
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Survival Plan

Postby [Ana & Alex] » Mon Aug 14, 2017 11:28 am

Thank you so much for your answers.

My typical blood panel includes white and red blood panels, platelets, liver and kidneys, pcr and tumor markers (CEA, CA 199).

Should I be looking for something else?

Anyone on MRI and X Rays instead of CT's that has any valuable insight about what one should persue?
Dx @ 29 yo. Mum (22. Mo) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d

veckon
Posts: 35
Joined: Thu Jul 27, 2017 7:44 am

Re: Survival Plan

Postby veckon » Mon Aug 14, 2017 1:58 pm

[Ana & Alex] wrote:Thank you so much for your answers.

My typical blood panel includes white and red blood panels, platelets, liver and kidneys, pcr and tumor markers (CEA, CA 199).

Should I be looking for something else?

Anyone on MRI and X Rays instead of CT's that has any valuable insight about what one should persue?


I am not sure if I understood my oncologist correctly, so someone should correct me if I am wrong. But I asked my oncologist about this and my understanding is that MRI would enable high accuracy three dimensional measurement of the tumor than CT. Based on CT they can see when it grows and shrinks but I think that is why (at least for rectal tumors?) you need an MRI to stage the tumor formally. But he also made a point that you do not need that if you are monitoring for recurrence.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

JJH
Posts: 67
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Survival Plan

Postby JJH » Mon Aug 14, 2017 3:11 pm

[Ana & Alex] wrote:...Anyone on MRI and X Rays instead of CT's that has any valuable insight about what one should persue?

I was on a followup schedule somewhat similar to what is recommended by ASCO for high-risk Stage 2 rectal cancer patients.

The ASCO guidelines for followup care are here:
http://www.cancer.net/research-and-advocacy/asco-care-and-treatment-recommendations-patients/follow-care-colorectal-cancer

Since I was a high-risk Stage 2 rectal cancer patient, my schedule for the first three years was:

Colonoscopy one year after surgery and again 4 years after surgery.
Blood tests every three months including CBC, serum chemistry panels, tumor markers CEA and CA 19-9.
Full body CT scans every 6 months; chest X-rays and abdominal/pelvic ultrasound scans for the alternate 6 month checkups.

I didn't have any MRI's during the followup period.


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